[Tdmyturn]

From healthy to aggressive multiple myeloma in a year

by Tdmyturn on Sun May 22, 2016 10:55 pm

So a month ago I was informed that my father was going in to have a defibrillator installed to help monitor his irregular heart beats. I was with him on intake and was completely floored when I heard the extensive list of medication that the cardiologist had him on. It was only a year prior where he was on cholesterol medication and aspirin! The surgery went well and the follow-up report was also favorable.

Yesterday I received this e-mail from my mother:

As you know he had his defibrillator placed in April ... All went well with procedure and proceeding on as normal. Heart is still weak, but now could be "shocked back" in event of stoppage from his AFib. About 10 days later he noticed extreme weakness, such as total exhaustion just walking from car to the house. Kept getting worse and finally called cardiologist to please check him out. Tests and more blood work when doctor said to see primary care doctor as he was anemic. Saw him on Wednesday, last, with more blood work, numbers still dropping on hemoglobin, and saw doctor that placed defibrillator on Friday. All that checked out, but blood still dropping.

So they put your Dad in the hospital Friday thru Sunday and every test you could think of was performed. Blood still dropping and numbers all messed up. Long and short, by Saturday noon in walk 3 doctors, one being an oncologist. He is also a hematologist and wanted to do a bone marrow biopsy and blood smears. Strongly feeling it to be multiple myeloma, but wouldn't get the results until Friday, today.

Your Dad had 2 units of blood on Wednesday, as his blood had dropped to 6.9. (14.5 is normal). He is extremely cold all the time, always turning up the heat and sleeps a lot, like 20 hours a day! Not much blood flowing to the brain. The blood transfusion has helped a bit to boost his alertness, but still fatigued and not on his "best game".

Today we met with the oncologist/hematologist to get the results of his bone marrow biopsy. The news was not great. His diagnosis is multiple myeloma (cancer of the bone morrow), and is in the aggressive stage. He will begin chemo as early as Tuesday and as late as Thursday (always details to be completed). The first chemo sessions will be 2 in a row, and then weekly. He will also begin with a very expensive pill (think $2800/month), which has also shown to be of some help.

The long/short is that his plasma is eating up all the red/white cells in his bone marrow and we need to tame them back big time! It's serious, but we are not without hope.

---

After several hours of multiple emotions, a lot of tears, and anger I dove in to learn more about this disease. I am not a doctor but my thoughts are this. For months preceding his procedure, I noticed and commented on the fact that dad seemed to be confused a lot lately, and at most all of our coffee meetings, he would have some type of horrific bruising, or bleeding story. Both of which he blamed on his blood thinners.

It appears to me that the multiple myeloma was throwing out multiple signs for quite some time, it also appears to me that prepping and planning for an upcoming defibrillator would have necessitated blood panels and blood work up. As a cardiologist, should he not be aware of and test for multiple myeloma and amyloidosis -- especially in what was a very healthy 80 year old man to rapid deterioration in only a years time?

Now what? His age and heart complications negate any transplant options. It looks like an immediate plasmapheresis should be performed to help reduce the stress on the heart followed by what? Chemo and CTDa medications?

I realize I am only just beginning to try to understand all of this and I also know that micro managing with the help of the Internet is a huge irritant to physicians.

But I am scared. They missed the original disease. It appears it now has complications from another disease. He is 80 years old and now carries around a defibrillator. We have a great cancer center here in Coeur d'Alene, Idaho, but we do not appear to actually have a multiple myeloma specialist. And near as I can tell the next step and the order they are taken will directly control the favorable or disastrous outcome. We also in my best guess do not have any time to spare!

I want to help them. I want to help point them in the right path. They are both wanting to have all the information, good and bad, and wanting to do what is best for dads final years 'God willing'.

[Multibilly]

Re: From healthy to aggressive multiple myeloma in a year

by Multibilly on Mon May 23, 2016 8:24 am

Hi Tracy,

Sorry to hear about your father.

It sounds like your father will be starting on a regimen that contains Revlimid (the expensive $2800 pill). He will also likely be on another drug known as dexamathesone. If his bone marrow biopsy showed that he has some higher risk genetic abnormalities, the doctors may also be considering adding another drug such as Velcade or Kyprolis, although his age and cardiac issues may preclude their use.

Patients tend to respond quite well to these new multiple myeloma drugs and your dad will likely begin to feel much better in the coming weeks. If you are going to try and help your parents understand things regarding this disease and his treatment, it would be good to verify just which drugs he is going on.

Once your dad is stabilized and his health has improved, you can always consider getting a second opinion regarding his treatment protocol. Seattle in particular has a world renowned multiple myeloma treatment center. They can advise on a suggested treatment plan even if he is treated in Idaho.

[lrankin]

Re: From healthy to aggressive multiple myeloma in a year

by lrankin on Mon May 23, 2016 9:12 am

A few thoughts come to my mind. My disclaimer is I am a year into my husband's myeloma journey. Myeloma gets misdiagnosed or missed all the time. Not sure why that is.

I would encourage you to find a myeloma specialist. It is very common people see a local hematologist / oncologist AND a myeloma specialist - they co-manage the patient. Do not be afraid to irritate the doctor with the research you have done on the internet. It is all in your tone and if they don't understand you are trying to be informed, then find a different doctor. You/your father must be very knowledgeable about his disease.

I realize your father has some additional issues to manage with the myeloma. There is a lot of hope with the new treatments. This forum is awesome.